Mother's Day....

I had such a fantastic Mother's Day!!  I woke up to breakfast in bed.  The kids made me cards, beautiful flowers from my sweetie and a gift certificate for a massage!!!  WOW!!!  I can't wait..... 
After we came home from church and had lunch we head to Morrow, Ohio.  We were able to pick up Hannah's 4-H bunny yesterday.  Roadtrip!!  What beautiful baby bunnies.  The breeder let Hannah come a day early to pick out her bunny before everyone else came the next day....so sweet.  She picked out the smallest baby.  A cute little all black fluff ball!!  She (we think it's a she) is 4 weeks old and all pure delight!!  (Pics to come later)
On the way home we stopped at Cox Arboretum.  How beautiful.  I honestly wasn't sure how well this would go because Hannah was really having a difficult time.  Behavior wise....  BUT....we gave it a whirl.

This is how Hannah's mood was in the beginning.....

to this....

"How's this mom?"

coming around.....

Ta Dah!!!!  Feeling better....

But, by the end, Hannah was doing better.  We did get some great pics of the kids...  It is an amazing place...

Complete with a butterfly house....

Is that a great shot, or what????

They were looking at all the fish....

Even had this awesome maze made of shrubs....  Kids loved it!!

Boys checking out a turtle....

After our stroll through the park, we talked daddy into going out to eat....Afterall, we had to feed the kids!!!  So, we headed to our favorite Mexican restaurant....  Mmmmmm....  It was such a nice way to end Mother's Day.  They were even handing out $10 gift certfitcates and a rose to all mom's!!!  I have the best fam ever!!!!!

Loves the Lord...

I am so proud to write that Hannah gave her heart to Jesus and was baptized this past Sunday!  She has wanted to get baptized for quite sometime, actually.  We wanted to wait until daddy was home from Iraq so he could witness this wonderful occasion!  She was baptized along with her two cousins, Audra and Emma.  AND was baptized by her uncle who is also her pastor.  I know he was very proud too....

Praying for Hannah

Praise the Lord!!!

Before the girls were baptized, they also sang Untitled Hymn.  They did an awesome job!  These are huge strides for Hannah for wanting to do all this in public.  She had one proud mama and daddy!!!

We have had a week of doctor's appointments...We finally met with Dr Neuro/Sleep doc...  It was a fantastic appointment!  My first impression was a great one.  We are going to do some sleep tests to see why she is sooo tired in school and why she is having such crazy sleep patterns.  In June we will go for an EEG, sleep study and an MSLT study (daytime study). 
We also saw her cardiologist this week.  Her blood pressures were up some, but she doesn't want to change her meds at this point...We are going for an echocardiogram to check on her heart....

Blitzen's been doing great!  He has been alerting at school and at home.  We continue to feel absolutely blessed to have him as part of our family...What a good boy, he is!!!!!

Recorder Concert...

For the past two years Hannah has been playing the recorder in music class.  Let me tell ya, the girl practices ALL THE TIME!!!  (This includes while in the van....  mmm hmmm... I know you get my drift!!!)

Anyhow, this past week she had her recorder concert.  All 220 of her classmates all gathered on the bleachers and played their little hearts out....   They were really good!!!  (i know, surprising, huh???)
They were accompanied with music and all. They even finished off the evening playing the fightsong!!  The crowd got into it like it was a basketball game...

 I was very impressed....  by how well they all did...

Here we come....

An exciting thing happened today....

I decided I needed to get Hannah another appointment with the sleep clinic.  Her sleeping patterns have really deteriorated in the last several months.  I was holding out to talk with the new Dr. Neuro about it.  Hoping maybe she would have some sort of explanation, meds or otherwise, and tell me how to fix it!  Of course, we all know, it didn't happen that way...  At our follow up appointment last week, I brought it up to her and honestly, she really passed it off.  She wanted me to discuss that with the sleep docs.  (obviously she didn't think it was medication related, at least not her seizure meds....)  So, I called the clinic today.  We chatted and I caught her up on the latest happenings.... 

Hannah has a sleep disorder called alveolar hypoventilation syndrome.  It basically means she has too much carbon dioxide in her body when she sleeps. Her brain is constantly waking her up and causing her to never get in a good sleep cycle.  To help this, she wears a BI PAP when she sleeps.  It does help to give her a better quality sleep.  However, in the last several months, she has difficulty getting to sleep, wakes up in the middle of the night, has trouble getting up in the morning, falls asleep in school and often and combination of all the above....

So today, she said she really wants to refer her to new doctor....  There is now a neurologist at Cincinnati Children's Hospital who just finished her fellowship as a sleep doc!!!!  NO WAY!!

 Drum roll please.....

 Her speciality is kids with epilepsy who have sleep disorders!!!!!!!!!

Oh where, oh where, have you been????    This may very well be a two for one deal...  I am so excited that she may bring new insight in how these diagnoses are connected.  Hannah is right up this doc's alley!

The sleep clinic was able to "slip us through the back door" and got us an appointment in April...  YAY!

You betcha..... HERE WE COME!!!

PURPLE DAY.....

This Friday...


March 26th...

Is Purple Day!!

Will you join us and  WEAR PURPLE....


In honor of Hannah...and all the precious children with seizures?!




Go to     http://purpleday.org/      to learn more about Purple Day
and the incredible little girl who came up with this amazing idea.....

playing the seizure game....

We had Hannah's VEEG follow up yesterday... didn't quite go as I had invisioned..... I don't really know what I expected....except hoping the new Dr. Neuro was a miracle worker, I guess. EEG was definitely abnormal. spikes in temporal region on both sides and also in the central parietal region (I think that is a new area...don't remember that from past EEG's). Slowings in the waveform all over the place. These all occurred in wake and sleep hours. SO, Dr. Neuro wants to keep with the Depakote but increase it (Depakote seems to be a good med for her in terms of low side affects). Two increases within the next two weeks. She wants to check her levels in 3 weeks. I will call her in 2 months to let her know how things are going.... She said, we would "go from there." Not sure what that is....

I can appreciate this step in "the plan."  I think she wants to see what getting Hannah on a really hefty dose will do for her seizures. However, with Hannah being on her 12th seizure medication, I know what will happen... we go through a honeymoon period. seizures continue. we continue to raise until the side affects are either too severe or we can't go any higher....Then, onto a new med....start all over. You know, the seizure game. I am so sick of it. But, there is nothing else to do. I guess I was hoping she would turn nothing into something....

She isn't giving up on Hannah. That is the most important thing. So, we keep on...keeping on....

Home, Sweet Home....

Hannah working on a wind chime for Nana....

We are home from our VEEG stay at IU Hospital.  It was a new experience as this was the first, NON Children's Hospital we have ever stayed in.  Most of the staff were great.  I think they enjoyed having a kid to work with.  The biggest thing was that they didn't have a Child Life Department, which I knew ahead of time.  So we brought our own!!!!  We had every craft under the sun.  It was "THE ACTIVITY ROOM!!!"  We were able to keep her very busy.

Blitzen was quite the hit as well.  Everyone loved him.  The word spread quickly that he was "in the house!!!"  Employees and patients were coming to see him.  We made lots of friends this past week! Top kuddos go to our favorite nurse, Melissa.  She was our nurse the first day and set the bar very high!!! (she came to visit us the rest of the week even though she wasn't our assigned nurse).  She would do ANYTHING and EVERYTHING for Hannah....What a fantastic asset to Indiana University Hospital.  TOP NOTCH!!! 

Hannah is the bravest, best trooper I know.  She got four IV sticks (two didn't work) and didn't even flinch.  The nurses commented that she did better than most adults there.  Hannah didn't complain at all the entire week.  She even wore her BI PAP mask.  Most of you don't know how monumental this is.  She didn't used to wear this in front of anyone...not even her dad.  She was very self conscious of how she looked in it.  Hannah declared this week that she LIKES it!!!!  WOW.  When she is ready for bed, she now asks for it, I help her put it on, and she is "light out."  I am one very proud mama.

We had to wrap her head so her BI PAP wouldn't mess up the wires....

Hannah and our favorite nurse, Melissa

We got some really good information while spending the week there.  Most telling to me, Hannah's EEG pretty much looks the same on meds as it does offf of meds....  I think a change is definitely coming our way.  We did get to see Dr. Salanova while we were there, but she wanted to wait until she could see all the information and the report until she gives her recommendations.  We have a follow up appointment in March, but not until the 17th.  I am very anxious to see what we are going to do.  Hannah had only one small seizure while we were there.  She had tons of spikes and slowings of her waveform, which is seizure activity.  Dr. Salanova did not want to take her off her medications.  She wanted to see how she looks and functions on the current dose.  Apparently not too well.....

While we were there, I also got a call from genetics.  Hannah does not have Ring 20 Epilepsy Syndrome.  I really thought this was going to be her diagnosis.  Her 20th chromosome was normal, not showing any ring.  So, the search continues.....

Giving lots of lovins to Blitzen.  He loves laying with her on the bed...

Awwww.  gotta love it......

We always hang a sign on the door, so no one is surprised to see a dog in the room.  (especially unsuspecting staff in the middle of the night!!!)

Just Chillin......Life of a Working Dog!